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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Idiopathic Anaphylaxis http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297268695 Message started by Tess on 02/09/11 at 04:24:55

Title: Idiopathic Anaphylaxis
Post by Tess on 02/09/11 at 04:24:55

Is there anyone here that has been diagnosed with idiopathic anaphylaxis and doesn't feel 100 % at any time betweeb events? I struggle with fatigue and pain and an "off" stomach at the end of the day. Light exercise helps with the pain and benedryl helps my stomach, but I'm not sure what will help with the fatigue. I tried gastrocrom, but it seemed to add to my stomach problems. I was wondering if the other mass cell stabilizer they sell in Canada (can't think of the name of it) would help with the fatigue. Any suggestions?

Title: Re: Idiopathic Anaphylaxis
Post by Lisa on 02/09/11 at 08:16:05

Hi Tess,

We do have those here diagnosed with IA, Debbie is one.

Depending upon your symptoms, your test results and your doctor, you may have ended up with a diagnosis of IA or not. Some of th researchers used to diagnose IA when the patient couldn't fit into the WHO diagnosis for Systemic mastocytosis. Some get this diagnosis when they can't show any proof of mast cell activation. As of September, we are all waiting to know what has come of that meeting to know what is going to officially define what is the diagnosis for a mast cell activation disorder versus that of IA and other forms. So, this is anybody's guess as to how it's going to be.

However, with IA, Dr. Akin's work on these patients proves that some of them are in truth SM patients because in spite of the fact that they could not find any kind of proof of mast cell activation, 1/3 of the patients had mutations on their genes with their mast cells! So, for all basic purposes, IA is considered a mast cell disorder. That being so, we are all treated with the same medications.

So, in saying this, gastrocrom doesn't work for everybody and this may be your case. However, we don't all have to take gastrocrom. I don't because of how expensive it is. However I take ketotifen which you can get in Canada. Just ask your doctor for it. As far as the fatigue goes, Tess, I've found that ever since I was put on Singulair, this is the medicine which has given me back a great deal of energy! To the point I almost feel normal once again! I would suggest that you take this!

As to having issues towards the end of the day, are you taking antihistamines twice a day or only once? When I was on them only once a day, this wasn't enough and by the end of the day I was triggering left and right and quite miserable. You also may need higher doses of medications. So this is something to talk over with your doctor!

Hugs!

Lisa

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 02/09/11 at 08:56:23

Lisa,

I was hoping you would be one of the people to respond because you are always so helpful. I am 55 years old and after having these anaphylactic reactions since my teenage years, I was diagnosed with IA three years ago. All these years I was told I was having anxiety attacks. It wasn't until I went unconscious and had to go to the ER that the doctors said it was anaphylaxis. My primary care physician sent me to a local allergist who did lots of tests - all negative. The allergist sent me to Brigham and Women's to see a fellow who I wasn't at all impressed with. He barely looked at me the entire time I was there. After a few more tests (not bone marrow) he also said it was IA. For a couple of years, I did not go into anaphylaxis but was always tired and in pain. My primary care doctor said it was depression and fibromyalgia. I started having anaphylaxis again last summer and my local allergist agreed with me that I should go back to B & W. I told him I wanted to see Dr. Akin because I had read so much about him and I was not impressed with the first person I saw there.

I finally got an appointment with Dr. Akin in December. In early January I had a bone marrow biopsy. All negative. Dr. Akin said I have IA. He changed my H1 from Zrytec to Allegra which was much better, less drying and he has me taking Zantac 150 twice daily. I use benedryl at night if I feel my stomach is off and it helps pretty quickly.

I will see Dr. Akin again in March and I will ask him about the Singuliar. I know Deb feels pretty well most of the time - but I'm not there yet. My questions was is it usual for IA patients to feel so tired and just not right all the time. I stopped telling my primary care person about how I feel because she always says it's depression and I should exercise more. I do exercise, but if I do it too vigorously, I go into anaphylaxis. I still have the desire to do things, but not the energy - this is why I don't think it is depression. I want so badly to do things.

Anyway - I have gone on quite a bit here - I will ask about the Singulair. My current meds are: 150 Zantac twice daily, Allegra 180mg in the morning and benedryl in the evening if necessary. I also take Wellbrutrin 150mg. twice daily. I appreciate any suggestions you can offer.

Title: Re: Idiopathic Anaphylaxis
Post by DeborahW, Founder on 02/10/11 at 16:20:57

Hi! Yes, I am your handy dandy IA person, also diagnosed by Dr. Akin. I have plenty of info to share on IA, but I am headed to bed now. (Yawn). I promise I will come back in the morning and write you a proper response!

Good night all!

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 02/13/11 at 05:22:30

Hi Tess!
First I would say, dont consider yourself an IA person, consider yourself a person with a mast cell disorder. That will be included this year when the WHO revises their list of what is a mast cell disorder.

Then I would say, YES we all have that fatigue.. some more than others, some less...I just started Singular... so Im waiting to see--and I was taking mine at night but after thinking about it, Im gonna change to take it in the morning.

Do NOT let an doctor tell you that you are depressed.. they cannot see in your head and most doctors who say that, it is because they are the ones who feel a lack of what to do next.. that is THEIR problem Hon, not yours. We have all experienced that! (doctors who want to call us crazy or depressed). Im happy and a positive person!!

I would caution you about exercising--because it IS a trigger for most of us. At the very least, be extremely careful of what yyou do and how much.

I would also caution you about Benadryl. Iy is a GREAT med but mostly used in emergencies when we are having a severe reaction--because Benadryl affects an enzyme that allows mast cells to degranulate faster.. I would replace that with Chlortrimeton or Vistaril. Save the Benadryl for when you are reacting REALLY badly, take it then.

I dont think you are medicated enough. You need both H1 and H2 antihistamines plus some mast cell blockers/stabilizers. You ma also need a proton pump inhibitor if your tummy is still reacting. I would recommend adding either Claritan or Zyrtec twice a day, Gastrocrom as directed and increase that Zantac to 300 mg twice a day. Your tummy will love you then :) You may also need to add Prilosec once a day for a month but that is only temporary for heartburn--then you take it on an as needed basis. Ask your doctor about all of this ok??

You have probably the BEST doctor in the world for mast cell disorders, so make a list of questions to ask during your visit.. but rest assured, most of us would give ALOT to be one of his patients :)
You are a lucky patient!!! We are glad youre here with us and please give Dr Akin this forums HELLO!!
Hugs to you,
Ramona

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 02/13/11 at 09:15:30

Thanks Ramona - Oh I forgot to say I have been taking prilosec and it works very well. If I stop it, I always have to start it up again. I will ask about Singulair when I go to see Dr. Akin in March. I am very lucky to live in Massachusetts and have these doctors nearby. I hope you get some answers working with the NIH. I know you go through so much when you have an "event." I have the same experiences with anaphylaxis. I have had this all my life and was just diagnosed three years ago and I'll be 56 this year so you can imagine how many doctors stood there scratching their heads. I'm so glad I found you all.

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 02/18/11 at 05:28:16

Hi Tess ,

i don't ahve a diagnosis yet , but am looking idiopathic :-) . I too have anaphylaxis . I also have daily symptoms including pain and fatigue .

I have been lablled depressed and having fibromyalgia as well and understand completely . The frustration of not being able to do is immesnse :-( . But we undersatnd .

The others have covered meds . I take it you have an Epi pen :-) or2 in date ??? Singluair has helped me a huge amount :-) Gastrocrom can be hard on the tummy initially . Have you been tested for H pylori ?? It may be worth doing so if not as it may be adding to your tummy problems . My problems started in my tummy . I was diagnosed with gastritis and my mast cells there cause the bulk of my daily symptoms now . I am asking about gastrocrom soon and a PPI . The more I am able to control the affects of my gut mast cells the better :-)

How is your diet ?? have you had any problems in this direction ? I have an exhaustive naughty list !!!!!!!!!!!!!!!!!!!!!!
Exercise triggers me , so I only do very little .

hugs , I hope you are well today

Josie

Title: Re: Idiopathic Anaphylaxis
Post by peter on 02/18/11 at 11:08:10

hi all RESEARCH IN INHERITED MAST CELL DISEASES
I put it in the research studies and trials on this site could some one put the link to that site do this for our KIDS

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 02/19/11 at 01:14:39

Hi Josie - Yes, I was tested for H pylori. I have three epi pens and have used two others this last fall. My diet is very limited now. I have baked potato, plain pasta, toast, mostly, but I will have other things too - like chicken, green beans. I am very careful how much I eat although with all these carbs, I haven't lost weight. It seems I have to be on prilosec or I'm worse. I was wondering if I should change my zantac to another H2. Any suggestions? It is very hard to balance things and have a good day. The symptoms I struggle with are fatigue, stomach "off" or nausea, and connective tissue pain. I also had an upper GI test which was negative for ulcers. Getting that chalk stuff down was a real hard thing to do with nausea. I don't understand that if my diagnosis is IA why I have so many daily problems. It should be called systemic IA with daily symptoms!

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 02/19/11 at 02:08:58

Hi Tess ,

I completely understand where you are coming from :-) . I have thought the same . My feeling is that it is either a biggie warming up , finishing off or daily lower histamine symptoms than anaphylaxis . I have 3 ways epi pen reactions happen . fast -0-100 in 3 mins max . medium , itching , flushed in cycles around face , hair , chest , body , mouth , stomach for up to an hour , then fast into chest and throat closing . and slow itching for hours , slow swelling sometimes stopping , then coming abck up to 6 hrs later .

I can send you my naughty list if you would like to see it . i have replaced some things so its not so bad . My food was so dry , so I have creme friece on sandwiches which makes life better . i ahve found patai starch works for me , so I am managing home made gravy xxxxxx

We make home made jam and other sauces with lemon juice to replace vinigar . It even works on home made chips , in olive oil only xxxxxxxxxxxxxxxxxxxxxxxx

You may benifit from liquid meds as most contain corn starch . Since swapping my bowel is less painfull and swollen . Antisickness wise as i also suffer from nausea and bowel spams going back to my stomach , I use cyclizine . It is an anihistamine antisickness .

Metroclopamide ( maxalon ) can contain sulphites . This gave me trouble .

Connective tissue pain is common for many of us :-( . But you in good company :-) . Cool baths help my back and legs . I know im in for a vomitty day if my joints are painful .

Ranitidine ( zantac ) had revolutionised my symptoms . I do think you are undermedicated . I found it hard that I need so much medication just to get by especially when I was still very poorly day to day . Now im on a good level that means I am more with it and in less pain . Also when I am getting poorly I can manage most symptoms now . I have found that an epi pen level reaction will be even with meds as my outpouring of mediators is too much for my orals , but the dosing helps me not get as ill and helps me recover better .

I am looking into other H2's as I am needing simvastain ( cholseterol ) and will ahve to swap to another one :-)

I don't know if singulair is possible for you . But it has helped me . In 2 major ways . better breathing , less wheezyness and less swelling . It is swelling for me which gives the pain . You can loose 2l before it shows as obvious swelling but this will cause your tissues to expand and press on nerves and you lymphnodes to enlarge and cause pain . My bowel swells to give me abdo pain :-( .

I can reduce some swelling with gentle massaging of fluid back towards the heart in small circular motions .

The chronic pain wars me down . I have to do what my body wants , then I get some time to think streight . I can send you my pain scale as well :-) . Do you know how pain works and which meds do what :-)
hugs
I hope you are having a good day :-)
Josie

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 02/19/11 at 02:26:37

Hi Josie - I was put on simvastatin too last year and my doctor took me off it for a while to see if it was the cause of my nausea - it wasn't so I'm back on it. What does zantac do in regards to taking simvastatin. I would be interested in your suggestions for food and pain medication. I take tylenol now as I am afraid to take motrin as I have heard it can be bad for those with mast cell problems.

Thanks for all your responses and help.

Title: Re: Idiopathic Anaphylaxis
Post by Lisa on 02/19/11 at 02:32:16

wrote on 02/18/11 at 05:28:16:

Josie, I don't understand how you can say you've not been diagnosed yet. You have been dear, Dr. Grattan gave you his diagnosis as angioedema, right? He's only got to define what kind it is - if it's the MCAD angioedema or angioedema in it's own right. But you don't need to think you don't have a diagnosis, for he's too high of an authority to question his judgment.

Yet, remember dear, you can have more than one issue going on here. Another thing is this, due to the recent research of Dr. Blanco, his findings of aberrant mast cells is very important. Although fibromyalgia can't be considered as a mast cell disorder in and of itself, any more than Interstitial Cystitis can be considered a masto disorder, it doesn't mean that there's not a connection there. Obviously something is going on with the mast cells within both disorders, this much they know. Also, there are many masto patients who have comorbid combinations of IC or Fibromylagia along with their masto. What creates the confusion for the researchers is that there are plenty of these IC and Fibromyalgia patients who show absolutely no sign of symptoms of masto and so they can't come out and say that these two disorders are part of a mast cell disorder, they remain seperate entities until research proves their connection. However, that doesn't mean that for us masto patients that these disorders are not coinciding within us for way too many of us have either fibromyalgia or IC or both. There's a connection there but research needs to prove where and how. They know the mast cells are involved and in both the MCs are proven aberrant in some patients. But this is all they can say.

So, although you've got some form of angioedema, it doesn't mean that your fibromyalgia is not part of your disease.

I would suggest that you show Dr. Blanco's recent work to your doctors and ask them if they think it's worth doing a skin biopsy and then staining those tissues as according to HIS methods for apparently the mere staining with tryptase won't reveal these aberrant MCs. He said that it was the staining of proteases along with tryptase that revealed the aberrant cells and not just tryptase alone. Your doctors are going to need to speak with Dr. Blanco in order to see how he did it and they may even have to send your biopsies to Spain in his care to get it done properly since this is brand new research we're talking about.

Doing this, Josie, may help to reveal what is going on with you and may be what you need to connect these two things together with you. It's certainly worth a consideration.

But, for now, Josie, until Dr. Grattan and his colleagues can do more investigation defining what form of angioedema you have, you do have a diagnosis of that along with the other issues - they are comorbid and considered seperate entities until you can prove the connection.

Lisa

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 02/19/11 at 06:57:50

Hi Lisa xxxx

I understand what you are saying . I did not explain myself clearly :-)

My fibromayalgia was diagnosed very early on in all this , 2 days after my first shock and all my fibro symptoms have other causes now . I do keep it in mind and I will show the docs Dr blancos work . I am just aware that this was diagnosed before any serious investigations had occured .

I say i am looking idiopathic for 2 reasons .:-

Dr Grattan has not heard my ambulance calls which demonsatrate my stridor with laragngeal odeama . So i know he has diagnosed oral angiodeama and not anaphylaxis . BUT my anaphylaxis has oral angiodeama , laragngeal , sweliing , BP changes , heart rate increase , flushing , facial and peripheral angiodeama and a raised nettle type rash .

Dr Grattan defined idiopathic angiodeama .

I say i am near idiopathic as I have been investigated for all the differential diagnosies for IA .

I do not have autoimmune angiodeama , hashis , addisons or renal ,lupus or myloma . I may have type 3 HAE , which is a disease classified as causing idiopathic angiodeama . So my most likely cause is histamine . I know I could have Masto with a normal tryptase. ( several ) I will ask Dr Grattans mate in 2 weeks .

If you think I am missing something I would love for you to let me know so I can ask about it :-)
But as things stand . I am true to my statement . i am looking idiopathic . :-) .

I completely trust Dr Grattan and his colluges :-). It took me a long time to find them and I know they know their stuff :-)

Hugs xxxxxxxxxxxxxx
Josie

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 02/20/11 at 02:39:40

Hi Lisa ,

Drr , yes I do have a diagnosis . I think I wasn't letting myself believe it because it has taken so long and we need to hone down the reason . I couldn't get excited about having an answer . BUT I have xxxxxxxx

I was also reffering to idiopathic anaphylaxis , feeling I didn't have a diagnosis there . But with upper airway compromise - tounge , largangeal I do fit a category of Dr greenbergers definitons of IA :-)

Which I have known i have had for a good year xxxxxxxxxx

So this final tweaking will get me to a point I have a useful diagnosis .

I don't completely disregard my fibromyalgia . I am just aware that it was diagnosed early in all this and all my fibro symptoms have other explinations now as I said :-) My other fibro only friends have been questioning my diagnosis from the outset .

Regards the depression . I am not depressed now . How do i know ?? because I have been . I know my warning signs and am not shy of anti depressants . I have had several things happen . I was bursting into tears for no reason , not sad , feeling ok . It was because mt steriod levels were low . When it was sorted i stopped bursting into tears .

I said to the doc's . I know I am bursting into tears but I am not sad .

For me , I am depressed if I can't give myself a talking to . You know the pull yourself together talk :-)

The other thing that happened we I stopped opening up to docs about my normal feelings about all that is / has happened to me as they were unable to find an answer and too willing to label normal coping and sorting feelings as depression . It is only now that I am believed and yes , have a diagnosis , that I can trust that docs wont make my feelings and fears to be depression and anxiety and my symptoms psychosomatic .

I have even been over old reactions to make sure i wasn't panicing . I didn't think I was but I needed to check . I had a lovely nurse talk to me about her panic attacks , and I explained how I knew it was my illness not a panic attack :-) she saw that at times it is hard to get our point accross with docs/ nurses who are set in their view point without being pre judged .

Some of us do experience anxiety as a part of our symptoms , a throwback to needing to be on high alert when we lived in caves . And we are at risk of depression with the changes in our lives . that does not make our whole illness either :-)

hugs Jose

Tess xxxxxx

Pain management :- hmm , yeah . With IA , mcas or masto we have symptoms and consequences of histamine and other mediators which can cause pain .

Mine is mainly swelling related :-( . My bowel swells to the point I can't take a deep breath in ( wince ) or touch my stomach at all . I have constant lower back and upper right sided pain . All scans have proved negative for anything nasty :-)

I also have musule spasms in every group at different times . The most troubling are my stomach ( abdo ) bowel and stomach . Bowel spams sometime raidiate up to my stomach and cause vomiting ( once or twice a week ) and down to frequency with rebound pains . These are better now I am not irritating my bowel daily with troublesome foods for me . Corn and gelatine , alcohol , any vinigar , caramel colouring , sulphites :-)

The spams are due to my bowel being swollen inside and my body pushing to move stools along . Smooth muscule is also contracted by chemicals in our inate immunity - compliment sub chemicals - 3a 4a and 5a . these are anaphlatoxins . So these don't help :-( Also histamine release in the bowel and stomach from mast cells there can cause spasms .

I am trying loperamide at the mo , with ok results so far .

I was taking codine which is known to destabilise and degraualate mast cells . So this has gone now .

I have tried buscopan . it made me a little sleepy as it interacts with our anti histamines . But i was post shock so the sleepyness ( like a baby ) may have been due to that .

We are a bit stuck for analgeics . As moprhine salts / codine are a no , non steriodals can cause problems , tricyclic antidepressants are a no with EPI PENS .

Tramadol is used by some people on here .I think it is the analgesic of choice ( ramona ?)

Unf I don't know if I have problem with Tramadol itself . As I have reacted , but its preperation at the time was the trigger . I am going to ask for efferecant and try some in clinic ( with docs ) because if I can have it in that preperation then it did help my pain .

Tylenol / paracetamol . is Ok , but rather weak . the focus should be on treating the cause of the pain :-)

Benzodiazipines are tolerated mast cell wise . They can help relax the musules and reduce any anxiety :-)

Gastrocrom should , when fully in the system prevent mast cell activation in the bowel and allow it to heal . I am not on this yet .

I am on singulair , which has helped a great deal . But more with my breathing . Some of my musule pain is / was due to my musules not having enough oxygen and working anerobically ( no / low oxygen ) most musules can maintain this for a time . But they produce lactic acid which causes cramps . So the singulair works to help my airway symptoms and as a consequence I have more oxygen circulating :-)

All of our tissues are capable of swelling . This is also true for musule , so some aching is due to extra fluid. the other contributory factor is swollen anything pressing on nerves . also our lymph systems are draining the fluid away to be rechanneled back to the kidneys . So enlarged lymph nodes can be pressing on nerves

H2's help block the histamine receptors in the stomach . Since being on ranitidine I am less swollen on my abdo and crucially have less internal bowel swelling and flushing . As a consequence I have less back pain :-)

My daily management of pain is :-
comfort :- sit comfortable with your legs up
exercise mangement - I swell with exercise so pace myself as I will continue to swell after I have stopped . I am shaky on my legs so do what I feel I can . Too much exercise will lead to me vomiting , swelling and flushing .
Distraction :- up to 5/10 i can normally distract myself .
Warm baths - not hot xxxx will relax my musules . But the exertion will make me shake . ( legs )

I am a hot bod :-
I use cold ( from tap not freezer ) flannels to keep my pressure points ( temples . wrists ) cool and on areas that are tingling as for me , this is a sign of impending swelling .
I sit under a fan . I have to be cool to the touch to be a happy temperture inside :-) If my back is hot , the fan on it will cool it

There are some cold suffers on here . I hope they will chip in for tips from their side :-)

Dehydration is my biggest problem . If i get dry I will shake more ,not just feet but head as well , swell more .

You can loose 2 litres into your skin before you will notice swelling . So if you are feeling dry , you most likely are :-)

I have developed my own pain scale on 1-10 which I take to hopsital as chronic pain is very under assessed . I am working on a new tool for nurses to asses chronic pain alone and in the presence of acute pain :-)

Deb is the one to ask about motrin . i don't have any expiernece of it :-)

Foods wise . Could you post a list of what you are eating and what you are avoiding and reasons :-) . That way its easier to see your triggers :-) Are you apprehensive when eating ? As a conncetion between emotional stress chemicals and mast cell degraulation has been found :-)

I have worked out my food triggers over time , as I reacted to different things with common ingredients . The best example is gelatine :- capsules + pre gelatinised filler ( tramadol ) ,then a pork pie , then medical examination gel , then cardiac stickers :-)

hugs
I hope today finds you well :-)
Jose

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 02/27/11 at 12:00:21

Josie - I will get back to you on this soon. I had a virus on my laptop and had limited time to use it. Thanks

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 03/01/11 at 06:40:11

Hi Josie - I have my laptop back after having some virus mess things up. I am still having some problems though.

I understand the pain you get with your stomach swelling. I get that during anaphylaxis and it is horrible. Very painful. If you have that sort of pain weekly, I very much feel for you. I do have nausea most of the time, but extreme pain during anaphylaxis only.

I found your comment on using Singulair very interesting. I do not have airway swelling so I don't know if I could get that prescribed to me. However, it makes sense that if your muscles aren't getting enough oxygen, then you're going to have pain - which I do often.

I've had no luck with Gastrocrom. It just adds to my nausea.

I was thinking of asking my doctor about doxipen for help with sleep, pain and H2 blocking. Is doxipen a tricyclic? If so, I guess that wouldn't be good for me.

I too must keep cool. I dread summer coming if it's going to be anything like last summer.

I do have some apprehension around eating foods. I eat mostly bland foods. I miss having tomatoes and spinach and tuna fish. I eat a lot of whole grain carbs but I want to add some fruit and vegetables back in. Any suggestions? I tolerate fresh greenbeans and roasted carrots. I'm wondering if I cook up some chicken and freeze portions right away, if I could defrost them another day and heat them up safely.

Thanks so much for your input. I'm sorry about your doctor's appointment - I have had the same reactions too - especially from my primary care person. I hope you can easily get all your documentation.

Take care

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 03/01/11 at 10:02:00

Hi Tess ,

I was very aprehensive with foods to . then i seemed to just think if its going to be it will and that took away the anxiety . Because I know my treatments work . So I manged to switch my brain to :- Im doing all I can to help myself . and its worked :-) .

I also listen to my body and give it what it needs . this is also helping as i nip a lot of things in the bud . I hate complaining and constantly ahving to ask for stuff has been very ahrd for me . Now I do , like the other day a taxi ahd a horrid air freshener which gave me instantly itchy lips , so i opened the window , its still cold here , and asked if could put it away - so that kept me a happy Jose xxxxxxxxx

I also found danger a hard thing . As an adult you can define and control the majority of things that would be dangerous . But with an idiopathic condition you can't protect yourself , or you feel you can't . It was only when I knew that I wouldn't die , because the epi pens work for me . That I could take my vice like grip off my risks :-)

Foods wise , I have fresh herbs to make things taste nice and pepper . I can tolerate cooked garlic so that helps . For salads , i was desperate , no mayonase , salad cream ? do you have that ?
I now have creme freice with cucumber . But whipping cream would work . I also have salad dressing with olive oil , lemon juice ( fresh ) , pepper and some herbs .

At first salads without tomatoes was awfal , but now I have found subsitutes beansprouts , lettuce ( of any kind ) cucumber , peppers ( not red ) ,

Im not sure how the local bunnies survive as I eat all their foods :-)

I would add similar : so other roasted root vegetables , and peas out of pods . Anything in the cabbage family is high in natural sulphate so causes problems for some xxxxxxxxx My partner makes me mint sauce , with lemon , sugar and mint ( fresh ) . Most dried herbs give me trouble .

My dinner can be introlerably bland without him :-)

Stock cubes are also a no . I was desperate without gravy . You can make it with wheat flour if you can tolerate it :-)

I can't tolerate polenta as it is corn based . the corn itself is innocent . They soak it in sulphites to soften it and corn flour / maize starch is the bleached with it . This revelation a year ago revolutionised me .

Do you have any grass or tree allergies ?? if so some friuts / vege can confuse your system , eaten raw , and make it think you are eating pure pollen !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If you have ill get lists of those your body may get confussed with :-) It called oral pollen syndrome .

On a very different note

I need to face treating my candidia , due to antibiotics , but I cant tolerate any creams or the pesseries . I have some fluconazole syrup , oral , but am worried . Normally when I worried there is a reason . Other wise ill be looking at a turkey baster and a pot of live yoguart in a most worrying fashion !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My GP did a breast exam tonight as I have a lymph node up in my r arm pit . Shes not convinced it is an abcess , but is upping my antibiotics . I think it is , because the last one was there and very deep .

I trigger easier when I have an infection , so i want rid , before spring comes .

Nalcrom / gastrocrom can cause nausea . I use cyclizine ( valiod ) a anti histamine anti sickness and this works for me :-) I have had nausea every day for 3 yrs now . I am just glad I found cyclizine works for me and is avilable without gelatine or corn . It is sedating , but I find I only get drowsy with sedating antihiatmines if I am not reacting .

Singulair , works by blocking the chemicals which produce swelling in the lungs . So in that way alone I am getting more oxygen :-)

Some on here treat their bowel spasms with loperamide . Again this can be availble in efferscant , so less worries :-) I am trying it with some effect . I have binned the codine but am keeping paracetamol ( tylenol ) as it helps control , had a durr moment there , time for meds , back in a mo , flushing after a bowel cramp - uuurrgghhhh , prostogalandins and my sweats - especially at night .

It is a sailicalte , which some people can't tolerate . I am Ok with this but not asprin or nasids ( ibruprofen , diclofenac ,) . In truth I have stayed away as I had gastritis early in all this and they don't mix well with sensitive tummies .

I am on strong painkillers , but due to my very active bowel , I don't need senna or lactulose or the like . Every cloud has a silver lining :-)It continues to perplex my practice nurses xxxxxxxxxxxxxxxxxx
I have been described as good with bowels . Its so going to be my epithaph , in 50yrs .

Thanks , the pain is miserable at times . i have learnt ways to cope . i am also working on a new tool for assesing chronic pain in hospital . because it is not assessed .

Ill see the organ grinder and go from there . I need quality of care and continuity and this top doc has the possibility of giving me that , So not throwing the bay out with the bathwater , plodding on :-)

many hugs
Jose

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 03/01/11 at 19:12:41

Hi Josie,
I get so tired of not eating a thing on the histamine list. Its not that I will ignore it but Im letting myself have small trials of different things that I havent reacted to in the past. Its so nice when I find I still dont react to some things.. but I find I react stronger to others.. like cabbage..cant do it period and I used to love it so.. raw in salads and steamed.. it doesnt like me now ;D and the tomatoes? never cared much for them but.. I adore italian foods and I am learning to make it with no tomato sauce, no spicy herbs.. and Joan gives me such great ideas about cooking mexican goodies with no bad stuff in it.

Ive been doing alot of thinking... Im really really tired of the medical establishments attitude towards a disease process they cant understand. I get asked, "Why do you have pain?" it makes me want to tell them they arent doing their job, have they forgotten how to do research on an illness?? But I sit and smile and explain. I just think to myself that they show their lack of concern when they dont bother to look it up. Werent we different as nurses??? I hope we werent as lazy, as low in compassion, as unprofessional as most I meet now..

I am thinking more and more of writing an article for some kind a nursing journal.. Nurse to Patient type of thing.. I think we have some issues that the average person doesnt.. like guilt using any medication for pain. Unless we see the reason for pain with our eyes, it is always suspicious.. even when I am alone. I question myself twice.. do I really need that pain pill?? Then I get angry.. I ask myself, what would I tell my patient and why dont I advocate for myself like that?? Just thoughts that have been going around in my mind.. do you ever think about that??? Well time for sleep for me...
Have a peaceful night,
Ramona

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 03/02/11 at 01:51:04

Ramona - I remember when my husband had a slipped disk before he had surgery nurses in the doctor's office treated him like a criminal because he needed more pain meds. It was hard enough for him to deal with the constant pain and then to be treated like that. I think it is a good idea for you to write an article.

Josie - I too use olive and lemon for salad now. I think your salad cream is our salad dressing. I will try cucumbers - that sounds good. I do have ragweed allergies in the fall until the first frost. Be careful with sugar and antibiotics as they can cause yeast infections - I'm sure you know that.

I have also been diagnosed with fibromyalgia many years ago although I don't know if that is true. I think my primary care physician just didn't know what else to say to me. I woke up this morning feeling like I had been hit by a truck - pain all over - but I don't think I have the tender spots they speak about with fibro so maybe I have something else - chemical sensivity?? Last time I saw my PCP I got the feeling she's just interested in my blood pressure, pulse and bloodwork numbers. It is frustrating.

Hope you're having a good day. Take care

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 03/02/11 at 02:42:45

Tess you sound like me when I first started having the masto bone and joint pain. Mornings are the worst...I take my pill and dont move til it kicks in.. a few tricks ive learned..

When you other meds (antihistamines) are well balanced, it doesnt take me as much medicine to stay out of pain. Prednisone definitely helps but you dont want those side effects--save that for emergency reactions only.

Sometimes I use warm castor oil packs with a heating pad set on low to areas that are most painful... that helps me. (natural medicine).

I also have to keep a balance between not moving cause it hurts and moving cause I will get stiff and it hurts worse LOL...some exercise helps even with the pain. Slow and steady.

I love those ideas for food!! You all make me drool LOL..
Have a great day 8-)
love
Ramona

Title: Re: Idiopathic Anaphylaxis
Post by Tess on 03/02/11 at 03:02:08

I might try an epsom salt bath as I've heard magnesium can help with our pain. Slow and easy is right!

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 03/02/11 at 03:49:38

Hi Ramona ,

No we were never lazy or unprofessional . We both prided ourselves on our standards .

Strong analgesia , yes , I held off it for months because I couldn't be ill enough for such meds . I needed to know what my pain was for and how it will go away . The thought of needing opites without a terminal or major condition just didnt fit ...............................................................

So I spent 8 months in teeth gritting pain with every movement , no sleep and everything that comes with sleep deprived unable to think Jose .

Then I was admitted after 2 biggies in a week and i met a pain nurse who could see I was in pain and treated it . I cried when she came to me beacuse i was so relieved that i had finally got to someone who would help me .

Dispite this others have treated me badly . 3 occasions going overnight in hopsital without oxycodone . Awfel . I didnt have my pain meds with me , it was late and they didnt check until the morning . One of the nights they finally gave me oromorph , my legs were shaking and didnt stop until the pain was treated .

I find it hard but wander how i would have treated me ??? with no documented cause for such pain ( in the understanding of most medics / nurses ) . the nursing statement of a patients pain is where they say it is , when they say it is to the extrent they say it is , seem only to be truely held when the cause of pain is clearly documented .

I am working on anew chronic pain protocol for assesment as i found chronic pain to assess in acute care . So i would love you to read it when im ready . i am nearly there .

I think all student nurses should experience chronic pain ( low levels tens machine for 24 hours ) to get an idea of what we are dealing with .

I think we are different in our knowledge and in essence knowing that many times we know more about our condition than our docs and the nurses caring for us . I have struggled about were there knowledge should be . I have experienced many levels for absolutely lovely to scary . The best I would say is those who may not have understood but were happy as long as i was well and they listened . These have tended to be older , experienced nurses . The worst a nurse who didnt listen when i said i wouldnt get to the bathroom and back . i got back , but struggling to breathe with a tachycardia of 180. The boss nurse apologised for her .

Another was a nurse who didnt know another patients meds , so didnt give it , then told me no more antiemetics (sickness) were available . i knew they were . i tried to wait and see if i could settle down , as i was rethching continually . half an hour later i asked her to ring the doctor as i knew there were other meds . amazingly a doctor appeared .

Some moments have come because I dont look ill and disabled . which have been bitter sweet as i think a time will come when i dont get asked . ;-(

My first care plan was hard . I write them about other , i shouldnt have one about me . I call it the book .

Tess ,

Pacing , as ramona describes , exercise to stop ceasing but not to induce pain , is hard to get right . at first i thought i was pacing , but i was pacing at the old jose standard not the new jose standard .

I had a nursing asistant tell me to slow down as i was doing too much and making myself ill .

For me it was feeling lazy which was so hard . i had to sit and leave stuff . Then one day it twiged . it was the realisation that a biggie followed a good day . I was doing too much and overflowing my barrel . Since then I have followed my body and it has helped .

I now go one stage further than i want to ( within my illness level ) . So I may want to wheel both ways to the toilet . but I will walk one way ( back ) .

A check of nutrients is vital for any of us restricted diets :-) blanotheapy is the posh word for warm long baths xxxxxxxxxxxxxxxxx

many hugs xxxxxxxxxxxxxxxx
Jose

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 03/02/11 at 09:01:33

Josie I sooooo very much understand!!! One day you look good (even though its hard to put all that effort into looks when you feel like hell).. and they look at you and think, "She doesnt look ill or in pain,".. Most of the time, I look like hell, and dont care because Im too sick going in by ambulance.. Then they look at me, and I can see it "Hmmm, low hygiene, clothes carelessly, overweight" and they react to me as if I am merely attention seeking, drug seeking and lazy.. and all I want is to get away from them!

That tens unit idea cracks me up LOL... I volunteer to administer it hehe,,,My daughter graduates as an RN next month--Im making sure she knows many different ways to assess pain and even though there are drug seeking people out there, people with pain have NO ONE but them to trust for a meaningful existence with comfort.

Another thing Ive found is, never never cry in front of a male nurse or Doctor--they ALWAYS attribute it to you hormones or a psych state of mind.. when the truth is, we hold it all in so strongly, we see our relief walk in the door (them) and the dam cracks--BECAUSE we trust they are there to make it better... no I have no trust in showing them how it feels... Now female nurses or doctors?? They seem to understand more, listen closer... I really dont understand the difference but its there..

There are so many other signs to look for with patients who have complaints of pain--is it reflected in their vital signs?? Walk out of the room and enter with no warning--how are they holding their body? Anything tense? What is the facial expression when no one is there? Are there relatives to speak to privately to ask how this person handles pain at home and how often do they need medication??

Any caregiver who assesses pain without looking at the whole picture is assessing their OWN level of comfort and worthless as far as Im concerned LOL.. I cant wait to read what you write... give it to them bluntly!! Remind them, one day it WILL be their turn.
love ya
Ramona

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 03/04/11 at 10:27:30

Hi Ramona ,

Cool , i will and am :-) .

Im a quiet pain person which just confusses them . When I had an abcess i was virtually silent ( very un usual for me ) I knew they thought I was attention seeking . Then I had to put on a gown for theatre , omg , owwwwwwwwwwwww , they saw that on my face .

I am posing the question , that pts in chronic pain may have less dramtic / no change in their obs due to the long term nature of their condition . that the body cant maintain the high state of pain in heart rate and blood pressure , so do not have classic obs changes until in serious pain 10/10 level .

I laughed out loud at your , how do I present question . I have experienced exactly that . if i am dressed and have brushed my hair , i am well and anxious if i am in whatever , i am unkempt and depressed / attention seeking .

Im pleased you are passing your knowledge on :-)

hugs
Jose

Title: Re: Idiopathic Anaphylaxis
Post by Riverwn on 03/05/11 at 05:21:39

Josie, I think you have a point there.. I KNOW from childbirth that I have a very high pain level tolerance--but one step over that and I freak LOL....

I am sooooo glad you are writing this... I leave it to you Hon.. and I back you 500% . Cant wait to read it!!
Hugs,
me

Title: Re: Idiopathic Anaphylaxis
Post by peter on 04/01/11 at 11:58:50

hi all dr cem akin and others have put out the best
definition of all mast cell disorders witch everyone cen follow
if you can poast it hear in its proper format

you can find it WITH GOOGLE

1MASTOCYTOSIS: COMMON SYMPTOMS MASTOCYTOSIS COMMON PRESENTATIONS

in the the NEWENGLAND SOCIETY OF ALLERGY .ORG 2011

This will hlep

Title: Re: Idiopathic Anaphylaxis
Post by Lisa on 04/01/11 at 13:09:02

THANKS LOADS PETER!!!!!!!!!!

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 04/10/11 at 02:54:52

Hi jennifer ;-)

Welcome to our forum :-)
You are not alone ;-) I am in a very similar position but ahve moved a bit further forward than you ;-)

Tryptase ;- This is very hard to catch high , only 30% of all anaphylaxis show high tryptase . So a high is useful but a normal does not mean its not anaphylaxis ;-)

There are several causes of angiodeama , not just histamine , and I wander if you have been tested for these . HAE - heridatory angiodeama , autoimmune agiodeama from lupus , thyroid , adrenals , and histamine .

HAE - compliments - C1 , C3 and C4
Lupus - ANA , C2
Thyroid - free T3 T4 and thyroid peroxidase enzymes
adrenals - adrenal antibodies and 9 am cortisol ( off steriods ) don't do this until you ahve other treatments .
histamine - tryptase , 24 hour methyl histamines and prostoglandins .

I ahve idiopathic angiodeama ;-)

I have lip , tounge and inner airway swelling , dizziness and fast heart beat , in a serious reaction .
Your doctors are wanting evidence of a typical anaphylaxis , you may never give them it . You are however having angiodeama which is affecting your airway . This is classed as idiopathic anaphylaxis , as per the protocol designed by Dr green burger .

Classification of Idiopathic Anaphylaxis (IA)

(Adopted from Roy Patterson, M.D. textbook on Idiopathic Anaphylaxis)
Disease Symptom
Generalized (G) Urticaria or angioedema with bronchospasm (asthma)
Hypotension (reduce blood pressure), syncope
Angioedema (A) Angioedema with upper airway compromise
(Laryngeal, pharyngeal, tongue)
Frequency of episodes More than 6 episodes per year: Frequent (F)
Less than 6 episodes per year: Infrequent (I)
Summary of Diagnoses IA-G-F, IA-A-F, IA-G-I, IA-A-I
Variations of IA Diagnoses
Corticosteroid dependent
IA- (CSD-IA) Applied when patient is controlled by prednisone but has recurrent episodes of IA below a threshold of prednisone.
Malignant IA (M-IA); Applied when patient requires high doses of prednisone to control IA. The dose is arbitrarily set at 30mg daily
Or 60mg on alternate days but much higher doses may be required.
IA-Questionable (Q) Applied for a patient with possible IA where Documentation of objective findings is unsuccessful and diagnosis is uncertain.
IA-Variant (V) Applied when symptoms of IA vary from classical IA.
IA-V may subsequently be classified as IA-I, IA-G, IA-Q or USIA
Undifferentiated Somatoform IA (USIA) Symptoms mimic IA but no objective findings are documented and the symptoms are not responsive to the regimen of IA.

For several years steriods have been used as the controling mediaction . More recantly new meds have come out which can stabilise the condition ;-)

I was where you are last year . I am now off steriods day to day and going to ed every 3 months ish , as compared to every 3 weeks .

Pimidine has alcohol as its preservative and I couldn't use it as alcohol is a major trigger for me .

I will list my meds so you can get a feel for where I am at now . I think You are under medicated sweets .

Am :-
ranitidine 300mg
ceterizine 10mg
piriton 4 mg ( same as clomitron ) drug :- chorpheneramine mealate
hydrocortisone 10mg ( adrenals not working )
hydroxizine 25mg
oxycodone 15mg
paracatamol 1g ( tylenol )
cyclizine 50mg

Inhaler - symbicort 200/6 - slow acting albutarol class drug and steriods

Lunch :-
paracatamol 1g
piriton 4mg

Tea
paracetamol 1g
piriton 4mg

8pm :-
oxycodone 15mg
Ranitidine 300mg
singulair 10mg
piriton 4mg
hyroxizine 25mg
cyclizine 50mg

Bed
paracetamol 1g

I was having daily throat tightenings and abdominal symptoms , until singulair and ranitidine was added . I have been on hydroxizine for a month and it has helped my brain fog and cysytis so much .

Its spring , pollen is not good for me . I ahve been in ED , 6 times the first year in march and april and 5 times last yr in march and april all with epi pen level reactions .

So far , cross fingers and everything else , I have not been to ED , YET , and its mid April .

Pollen is a problem to me , but it needs other triggers to make me ED level ;-)

In IA / mcas (ill expain next ) , we have a collection of normal mast cells which are behaving badly .

We may have a tryptase rise , but only in a short time frame in a serious reaction . 1-2 hrs post onset of symptoms . So catching it is hard . thats what the other tests are designed to do .

MCAS /MCAD , is a new diagnosis , which is having its diagnostic criteria honed down . It is where people have all the symptoms of mastocytosis but don't fit the criteria . The drugs are the same .

mastocytosis has extra , mishapen mast cells in clumps , in skin and bone marrow , which misbahave and burst with triggers . With so many extra cells , to release tryptase , it is higher in general terms and/or in a reaction . This is called clonal .

There is one exception , mmas , which is monoclonal mast cell activation . This is where there are extra mast cells but not enough in big enough clumps to be mastocytosis . these patients will ahve a normal tryptase

So as you can see there are 2 types of mast cell disease which do not show high tryptase . Most doctors do not know this. I have a paper about this if it will help .

Triggers are common to all of these conditions inc HAE . Pollens are a common trigger . people with mast cell disease can ahve true allergies as well , shown by high IGE in their blood . As a group we must NEVER come off our antihsitamines for testing , it is dangerous .

There is an article in the triggers section by Deb , our forum lead , which will help . Controlling triggers is central to managing this ;-)

Mine are sulphites , alcohol , vinegar and anything fermented , stress emotional and physical , infection , hormones , heat .

For the time being , whilst you find a mast cell doctor . There are 3 things to do doll ;-
Suss your triggers and avoid avoid avoid
use the low histamine diet :-
www.urticaria.thunderworksinc.com/pages/lowhistamine.html
keep a diary , of foods , lotions and potions and meds , and your symptoms , i sussed so many of my triggers this way

xolair , will work , if you have a IGE allergy . There are several routes to mast cell activation known and many not and IGE is only one . So it may work , but may not .

Singulair works by blocking leucotrines found in the lungs . I have found this has helped my airway swelling considerably . I was blue all the time when walking , I am much better , only blue if I exert myself , and far less so . It has also helped my general swelling , legs and hands in particular . It works regardless of the cause of swelling ;-)

The drug groups used for mast cell angiodeama , are :-
anti histamines :- type 1 drowsy - benadryl (us ) piriton UK ( clomitron ), ketiofen and non drowsy - ceterizine and allegra .
Type 2 - ranitidine
lecotrine inhibitors :- singulair
mast cell stabilsers :- gastrocrom and ketiofen

I am not on a mast cell stabiliser yet , its my next step .

My doctors are also struggling to diagnose anaphylaxis . I have had 26 Epi pen level reactions. I think yours need to know that anaphylaxis is possible without a tryptase rise . Mine are open to having proof .

When you are swollen , I think an adrenaline nebuliser would be useful . NO alcohol :-) I have had this when I have not had any systemic symptoms - dizziness , high/ low pulse or high / low blood pressure .

I completely understand where you are at sweetie ;-) I have been there with a stridor xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I also have rebounds in the days post a biggie . It takes me a week to recover from each dose of adrenaline .

Ive got so much to chat about ;-) Ill stop there for now ;-)

Many hugs
Josie

Title: Re: Idiopathic Anaphylaxis
Post by Lunajen on 04/10/11 at 03:47:31

I have had every angioedema test. They are all negative.

Thyroid test come back negative or within range.
Lupus is negative. Did test Positive for ANA but on the very low range. 1:160 smooth and speckled. But the RNA and Florescent test were negative.
HAE all C1,C2, and c4 were in range.

Adrenal system is fine ( and they usually check after larger doses of steroids).
And tyrptase was normal.

I have had some elevated levels on my Alkaline Phosphate back in 2010 and on my Sed rate from time to time.

My initial IgE was 55 when I came in, while on my medications, it is still between a 22-27.

My drug list is as follows:

10-40 mg Zyrtec
4 mg chlorpheniramine 1 tablet 4 times a day.
300 mg ranitidine 2xs a day
10 mg singulair at night
50 mg savella 2 times a day ( fibromyalgia)
Gabapentin 100 mg 2 at night and 1 in the morning (nerve damage due to ear infection that wasn't treatable by antibiotics; became allergic to all the ones usable).
Vitamin B in the morning (helps with energy and nerve damage repair)
Flonase 2 puffs once a day
Plumocort turbo inhaler (asthma)

I also have a epinephrine inhaler (Primatine Mist in US) I don't know if you have anything like that in the UK.
Active ingredient (in each inhalation) Purpose
Epinephrine 0.22 mg.
I suggested this to my Physician and it seems to work but not this last episode. ( had used it three times and the swell was coming back). It has helped on the smaller reactions with my lips.

I have some hydroxyzine as well ( it is mainly for back up or as needed).

-I have also so always had the intestinal swelling, even as a child with the hives. I always knew they were coming because of the diarrhea and nausea. And without fail every ester I was drugged up in church and not really enjoying the Easter egg hunts....

-Infections or viruses can trigger episodes in me as well. Any flu or even a cold ( with this last episode, I think it wouldn't go away even on the high amounts of steroids was b/c I was starting a cold. I got it about 5 days after the ER visit.)

-I haven't tried the low histamine diet but it is going to hard...sometimes the only thing I can stomach is Iced tea and not having that is going to suck.

-The last episode did have me in the ER and the only strange thing was that my pulse oxygen level never went down to far. I do have raynaud's as well and I am wondering if that might effect and pulse ox machine and their readings. My hands were blue and I still had excellent oxygen levels.

So there is a second bit of history....And i moved my original post to the introduction section..... :)

Title: Re: Idiopathic Anaphylaxis
Post by Josie on 04/10/11 at 05:07:47

Hi :- 2 threads going , as Jennifer moved it to introducing yourself ,

So can everyone answer there ;-) Jose